A-Day

My name is Michelle, and my daughter is autistic.

Now that’s a phrase that I hoped that I would never have to say.  But after a 3 hour appointment this afternoon, where my daughter was observed and analysed by 2 people who had never met her before, that is exactly what I’ve been told is the case.

“We can tell you that after observing her this afternoon, she does indeed meet all the criteria for us to give her an ‘Autism Spectrum Diagnosis’.  Now, get on your way.”

Or at least, that’s my interpretation of how our meeting went.

In one fell swoop, they took away all hope and positivity I had about my daughter’s future.  The delight I’ve been taking in her relatively recent ability to communicate her needs to me and others by taking us to what she wants has been diminished to an autistic trait.  “She is merely using you as a tool to get what she wants – you are not a person to her, she is taking you to what she wants but not using any of the skills we’d expect to see from typical children such as pointing or making eye contact to communicate her needs.”  So you’re telling me that the mini-celebrations I’ve been having about Tilly making it clearer about what she wants is actually a trait of autism, and that I shouldn’t be rejoicing that her development is progressing?

“And now what?  What are the next steps?”.  I ask.

“Well, nothing.  You are already getting the services she will need so there is nothing more we can do.”

And there it is.  My fear of what might happen if today’s outcome was that Tilly did indeed have autism.  The grand total of nothing.  The pathetic 6 week block of speech therapy (if we’re lucky) we get already will remain that.  The ridiculous input and support from Occupational Therapy will remain just that.  The educational support she gets will remain the same.  She may be able to access the ‘specialist communication provision’ that is on our doorstep – but there is no guarantee as spaces are limited.

We’ve got yet another label, another issue to deal with but with absolutely no support whatsoever.  Why?  Why is this acceptable?

In the words of the paediatrician who saw her today, her communication issues are preventing her from learning – but as there is nothing in place to address this, how will learning ever improve?  We’ve been given a mind-blowing diagnosis and set on our way.  Our 8-year old daughter has had issue after issue to deal with since she was born, and still, we are having to fight our way through whatever bloody system is in place to get support that will help her.

It’s only been a few hours since her diagnosis but after a good chat over a bottle of wine with our wonderful friend who works with Tilly, we are already preparing ourselves for battle.  If nobody is going to fight her cause for us, then we will have to prepare our armoury and go in all guns blazing to get the support and education she should be entitled to, and very much deserves.

So I will continue to celebrate all the things Tilly achieves and the progress she makes, not because of her new label but in-spite of it.  When she looks me in the eye and smiles or gives me a cuddle because she wants to hold her mummy I will continue to be proud because regardless of all the obstacles she faces; she continues to fight and move forward, unaware of her labels.  And because she is so utterly incredible we will fight tooth and nail all we can for her, to get all the help and support she needs and deserves.

Here we go again….

 

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4 thoughts on “A-Day

  1. You absolutely should be rejoicing in the progress she is making, it’s fab! At times it will feel slow to you, but other times she will amaze you too. I remember this feeling of being sent away with pretty much nothing. It hurts, but that pain eases over time too. My advice would be to try and find any other local parents to meet up with, they always have the best information! Shocking that you’ve gone so long already without decent support though :/

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  2. I felt exactly the same as you 15 months ago, I even asked the paediatrician what happens next and she looked at me blankly and said, “he has his diagnosis” Thankfully his school have been amazing and at the moment he is doing really well, although both his speech therapist and OT have left and there have been no replacements! But that seems to be pretty par for the course, we shall all just keep fighting, because that’s what mums do best x

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  3. Tilly is so lucky to have you to fight her battle(s). I would be only too happy to help where I can. Keep fighting, having known u all your life, I know you will progress with your mission with sheer determination! X

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  4. Hey, my 8 year boy was diagnosed when he was just 18 months old, development dyspraxia and on the autism spectrum,we received speech therapy, around 8 sessions, it made a huge difference, and every little achievement should be celebrated. When he started school, we as parents had to be his cheerleaders and fight for the support he needed, and the school was supportive, however they are limited in terms of the support they get from the MOE. He has come so far, and every day is a success for us, even though there are sometimes some setbacks. You should be proud of yourself as parents for not giving up, stay positive, parents know their kids the best, what they are capable of and how much love they can give, and be their cheerleaders and fight for what they need, it will show results. Thinking of you, it is a long journey, but just hang in there😀

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